Author ORCID Identifier
Document Type
Article
Publication Date
11-29-2022
Abstract
Current guidelines from the National Society of Genetic Counselors (NSGC) recommend that patients' ancestry be obtained when taking a family history. However, no study has explored how consistently genetic counselors obtain or utilize this information. The goals of this study included assessing how genetic counselors collect their patients' ancestry, what factors influence this decision, and how they view the utility of this information. Genetic counselors working in a direct patient care setting in the US or Canada were recruited to participate in an anonymous survey via an NSGC email blast. Most participants (n = 115) obtain information about their patients' ancestry (96.5%), with the most common methods being directly asking the patient (91%) and utilizing intake forms (43.2%). Of participants who ask about ancestry directly, 50.5% always ask about the presence of Ashkenazi Jewish ancestry and 70.3% always ask about additional ancestries, suggesting that for most genetic counselors’ collection of ancestry is standard practice. However, the clinical utility of ancestry information is highly variable, with the impact on genetic testing choice being particularly low. A slight majority of participants support a reevaluation of current ancestry guidelines (51.3%), with many participants suggesting that the varying utility of ancestry in different clinical indications/specialties should be incorporated into guidelines. Despite being standard practice for most genetic counselors, no unified approach or standard for how ancestral information should be used in genetic counseling practice was identified.
Keywords
ancestry, cultural competence, diversity, genetic counseling, practice guidelines, utility
Publication Title
Journal of Genetic Counseling
Funder
Case Western Reserve University
Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-No Derivative Works 4.0 International License.
Department/Center
Genetics and Genome Sciences
Recommended Citation
Hubbel, A., Hogan, E., Matthews, A., & Goldenberg, A. (2023). North American genetic counselors' approach to collecting and using ancestry in clinical practice. Journal of Genetic Counseling, 32, 462–474. https://doi.org/10.1002/jgc4.1655